Lyme Update #17 *New Protocol*

After nine months of IV Therapy augmented with oral medication, I am off IV Therapy. It’s exciting and scary. I’m a realist, will party after doctor releases me. It is common to complete treatment only to have it return. I am optimistic and believe what you think is where you’re going. I want to find myself in good health to explore rebuilding my life.

New Treatment Protocol: One year course of oral medication

I’ve included comments from 5/31/16 office visit.

Report:

Continued severe memory loss worse since phone consultation, continued overall pain

More profoundly fatigued, pain from fall also a factor, Patient noted having more SVT, Supra Ventricular Tachycardia, lower edema

Tenderness in right knee with swelling noted, questionable hepatomegaly

Patient to follow-up with Cardiologist, MRI on right knee, continued air hunger, follow-up with Chest X-Ray

Increased dosage of Morphine Patch, patient will follow-up with labs to update ammonia, ferritin, iron and TIBC. H&H levels have dropped.

I’ll continue to fight like hell expecting a positive outcome. I will choke down the huge pills and be grateful.

Xx  M

3 thoughts on “Lyme Update #17 *New Protocol*

  1. I’m keeping my fingers crossed that your health keeps improving. Lyme disease is such a horrible illness. I was infected about fifteen years ago, back when some doctors didn’t believe there was any such thing, and those who did weren’t sure how to treat it. Luckily I had a great doctor, but even he wasn’t sure what the best course of treatment would be. Finally, after consulting with some Lyme specialists, he put me on antibiotics for a year. Unfortunately, my health was never the same. I already had previous health issues: migraines, fibromyalgia, and IBS. After the Lyme disease I wound up having Sjögren’s syndrome and peripheral and autonomic neuropathy, and frequent vertigo. Because of this I had to take early retirement/disability from my job as a children’s librarian for twenty-six years. Still, considering some of the horror stories I’ve read about people suffering from major organ damage and sometimes even death, I consider myself lucky. Hopefully someday soon they’ll come up with an outright cure for this that doesn’t impact patients health.

    Liked by 1 person

    1. Hi friend
      You must have been going crazy trying to understand what was wrong. I’m surprised you found a doctor familiar with Lyme background. Huge advances have made Lyme semi-treatable. I say that because most stories and videos show people left with some type of health issue. One of the BIGGEST problems is the infighting happening with doctors who believe Chronic Lyme exist,requiring long term antibiotic use. The other doctors argue Chronic Lyme doesn’t exist and at most patients need 6 weeks of antibiotics. To me it appears there are 8-10 doctors who advise the CDC on what the disease is, where it can be found and what it is clearly not. Only recently the CDC updated the number of cases from 20 years ago. What happens is patients get screwed from every angle. If the CDC says 6 weeks at most, Medicare will only cover 6 weeks, all government health related services only cover 6 weeks. Then Insurance Companies jump for joy because they only have to cover 6 weeks of treatment and so it goes. Most of the Lyme doctors are hunted down by Medical Board, license suspended for some period of time, which causes them to go bankrupt, they are not able to treat their patients unless for free or under table. That’s the reason Lyme doctor’s do not take insurance. It is one political pile of shit.
      I know what my future could hold and choose not to think about yet. God has the wheel and he knows what my future holds.
      I understand your how you feel about how treatment can cause organ failure. My liver is under watch, I signed up for treatment knowing death was a possibility. What choice do people have. What makes me crazy is how expensive treatment is, we’ve spent $150,000 already. What about the people who can’t afford treatment? Many who start treatment can only go for so long then have to sell house…..It’s crazy.
      I pray for the day more is known about Lyme/co-infections and the political BS is pushed aside.
      Boy….I went on forever! I knew you had a Lyme history and think you are blessed to be alive.
      Thank you for taking the time to reply with good information in it.
      Hugs
      🙂
      M

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